Elli Thatcher was the “safe” one in her family. One brother, Cameron, was born with a congenital heart defect. Another brother, Joey, has Type 1 diabetes. In the fall of 2014, her father received radiation for a cancer diagnosis.
Thatcher was safe until it became clear that she never really had been, her mother, Kristin, said. When she was a sophomore in high school she experienced the first flicker of symptoms signaling that something might be wrong.
Always so healthy and strong, Thatcher started feeling lightheaded during basketball practice. She couldn’t make it through one without feeling dizzy. Then her vision and hearing would take turns cutting out, she said.
Heeding the warning signs, Thatcher went to see a doctor and after running tests on her blood and heart, they said her iron levels might be low — perfectly normal for a teenage girl. They prescribed her iron pills. But the symptoms, and Thatcher’s overwhelming feeling that something was wrong with her, continued. When she returned to the doctor, after running more tests to prove she was perfectly fine, they suggested that it might be her hormones. “I felt that I wasn’t finding any of the right answers,” Thatcher said.
She quit basketball and didn’t play during her junior year. Her symptoms persisted during normal activities such as driving or shopping, even when she wasn’t physically active.
During Thatcher’s senior year of high school, the symptoms manifested into troubling physical form: a bump on the right side of her neck, just below her jaw. While it wasn’t hugely noticeable, the right side of Thatcher’s face would swell. She made another doctor’s appointment, but happened to be fighting a cold at the time and the swelling seemed like part of her infection. She was given steroids and antibiotics.
Another doctor uggested that she have her tonsils taken out, and Thatcher went through with the procedure, but nothing changed. Over the summer after graduation, she felt completely drained and the continued swelling scared her. “That’s when I was truly worried that something else was going on,” her mother said. “It’s terrible. As a parent, you feel so bad when your child is telling you that something is wrong and you can’t find the answers.”
Finding the answers
In the fall of 2014, Thatcher started college at The Ohio State University. She decided to take a job at the new hospital where her mother worked, the university’s James Cancer Hospital and Solove Research Institute. A last-minute change in positions put Thatcher on the surgery floor, responsible for communicating messages from the surgeons to patients’ families.
After getting to know the staff, Thatcher approached Dr. Matthew Old, a head and neck cancer surgeon on her floor, and asked for his opinion about her symptoms. Deep down, Thatcher was worried that it might by lymphoma. Dr. Old suggested she get a CT scan of the area. He followed up with her to look over the results and examine her neck. As soon as Dr. Old looked down her throat, he knew there was something wrong.
There was a baseball-sized tumor growing at the base of Thatcher’s skull. Her carotid artery ran through the center of it, along with nerves controlling her facial muscles, vocal cords and tongue. The growth was cutting off the blood supply to the right side of Thatcher’s brain, the source of her dizziness and nausea. It was also affecting her tongue and vocal cords.
It was so rare that Dr. Old said it has a one-in-five-million chance of occurring. It just so happened that he had received specialized training in this kind of tumor, called paraganglioma, from his mentor, so he was able to quickly diagnose it. Without a procedure to remove it, Thatcher could have a stroke and possibly die, he said.
As scary as the diagnosis might be, Thatcher was relieved to finally have an answer. “It was just being in the right place at the right time and meeting the right people,” she said. Thatcher ended up in the one place where people could help her.
A life-saving procedure
Thatcher withdrew from classes in February and her surgery was scheduled for April. Over the course of 17 hours, five surgeons painstakingly worked to remove the tumor while saving as many of the nerves and as much of the healthy tissue as they could.
Throughout, they monitored her brain and blood flow to track her progress. If they tilted her head to the side too much, her heart rate would drop as the blood supply was cut off to the brain. Shortly into the procedure, they realized that they couldn’t preserve her right carotid artery or the nerves controlling her right vocal cord and her tongue. Those were lost.
The ear surgeon, responsible for drilling through one of the bones in her ear to provide more access to the tumor, worked carefully for four hours to ensure that she wouldn’t lose her hearing — which Thatcher knew was a possibility. They also worked around her facial nerve so that the muscles in her face wouldn’t droop. Her other carotid artery would be able to support her normal functions.
After it was over, doctors realized that Thatcher couldn’t move her left leg below the knee. Working around nerves on the right side of the brain, which control the left side of the body, can have this effect. The Thatchers were relieved to learn that the mobility loss was only temporary and she is already walking with the help of a leg brace or a boot on her left foot, forgoing crutches.
“Watching her go through this was scary,” her mother said. “She’s 19, but she’s still my child. To me, she’s still 2. I want to watch her sleep and eat and walk all over again.”
Thatcher has received multiple follow-up procedures to strengthen her remaining vocal cord. From now on, her voice will always sound a bit raspy and softer than she would like. She has had to adjust her talking and chewing to compensate for her paralyzed tongue and lost palate. Thatcher rejected having a feeding tube and is now eating soft foods like ice cream, mashed potatoes and macaroni and cheese.
“She’s an inspiration to us,” Dr. Old said. “To go through so much and endure this surgery, her strength and resilience is just amazing.”
Pursuing a normal life
Her expected recovery time was 12 to 18 months, but Thatcher was back at work after two. The hospital has become like her second home and the staff surrounds her with love and support. Thatcher is used to being surrounded by such positivity through her family, which she credits with helping her work through the difficult surgery and the months of recovery afterward. Discovering a love of writing has led to the creation of Thatcher’s blog, where she shares her story.
Classes resume at Ohio State on August 25, and while Thatcher has to retake her spring semester classes, she is excited to return to school and move into an off-campus house with seven of her friends.
“I’m ready for the most normal life I can have,” Thatcher said. “I haven’t had the normal college experience yet and in a couple of weeks, I’ll be back in class, hanging out with my friends and going to football games. It’s all the more exciting because I didn’t think I would do that again. I’ll be living everything I thought I missed out on.”
Thatcher is a health science major who wants to pursue medical school and become a pediatric oncologist. After “being on the other side” as a patient, she wants to be able to help others. By continuing to work at the hospital, Thatcher is also able to share her story with the families of patients and empathize with them even better than before.
While there are still challenges ahead, and a 10% chance the tumor could return, the hospital staff and Thatcher’s family firmly believe her optimism, inspiring strength and resilience will power her through.
“At the end of the day, she’s alive,” her mother said. “She owned this entire experience. She’s working and going back to school and sharing her story. I didn’t think she would be able to go back to school this year. She just amazes me. We all feel so lucky.”